Ending HIV as an epidemic in black communities is more than a battle about health care or viral suppression. It's also about stomping out the stigma that is associated with the virus, according to health care experts and advocates who spoke as part of a panel discussion this past weekend at the Congressional Black Caucus Foundation's Annual Legislative Conference.
On Friday, at the Walter E. Washington Convention Center in Washington, D.C., a sparse but vocal crowd attended Words Matter: How Eradicating Stigma Can Lead to the End of HIV/AIDS, a panel presented by congresswoman Barbara Lee (D-CA).
Rep. Lee opened the discussion by putting the event into a larger context.
"We've had this brain trust for how long? Over 15 years now?" Lee said. "It's important that we keep beating this drum because people think we've accomplished our goals, that we are living in an HIV-free world. And of course, we know we have not."
Rep. Lee is a longtime congressional champion of domestic and global HIV programs, having coauthored several pieces of HIV-related legislation, and she is a member of the Congressional Black Caucus.
She pushed hard on the correlation between the politics and the epidemic.
"Ending HIV/AIDS is a political struggle," Lee said. "We need those public officials to be accountable to our agenda or they don't need to be elected."
The panel included several longtime advocates in the fight against HIV/AIDS, including Dázon Dixon Diallo, M.P.H., founder and president of SisterLove, Inc.; David Johns, executive director of the National Black Justice Coalition; Gloria Crowell, director of HIV/AIDS Mission at Allen Temple; and Kevin Jones, executive director of Urban Coalition of HIV/AIDS Prevention Services (UCHAPS).
Johns admitted to being surprised about having to keep discussing the epidemic in black spaces, saying, "One thing I didn't anticipate when I took the role on at National Black Justice Coalition was how much I would have to have conversations about HIV/AIDS with black folks in particular."
He took note of the audience size (approximately 30 people) in correlation to the importance of the issue of HIV/AIDS and stigma in black communities.
"It's still frustrating to me that this room is not filled," Johns lamented.
It should be noted that, during this same session time, there were hundreds of mostly young attendees huddled into a packed auditorium to catch a glimpse of hip-hop star and activist Meek Mill and a plethora of celebrity panelists (Van Jones and Michael Eric Dyson, among others) as they discussed criminal justice issues, music, and social justice. It remains unclear whether being pitted against another panel with big name celebrities or, in fact, HIV stigma kept more attendees from joining the session. But, the low numbers did not go unnoted by the panel.
The panel presenters were, however, undeterred. They dissected the definition of "stigma," largely underscoring the Centers for Disease Control and Prevention (CDC)'s interpretation, and discussed how stigma impacts testing, care, and treatment.
According to the CDC, stigma in regards to HIV is defined as follows: "[N]egative attitudes and beliefs about people living with HIV. It is the prejudice that comes with labeling an individual as part of a group that is believed to be socially unacceptable."
The CDC further reports: "Many of the ideas about HIV come from the HIV images that first appeared in the early 1980s. There are still misconceptions about how HIV is transmitted and what it means to live with HIV today."
Johns noted, "This panel is important because, since the introduction of the epidemic in the '80s, black people have been dying at a disproportionate rate as a result of AIDS and HIV, and so much of that is a result of stigma."
Related: Black Lives, Health Care Justice, HIV Stigma -- and Beyoncé's Lemonade!
Diallo of SisterLove, Inc., echoed these sentiments when describing her engagement with her clients and the larger community of black woman she interacts with in Atlanta. She spoke to the frequent disconnect between public health messages about which people are "at risk" or participating in "risky behavior" and how black women perceive themselves and their own risk factors.
"The first stigma is 'who is that woman you are talking to?'" Diallo said. "'Are you talking about that woman who has a lot of sex or is frivolous with their partners? Cause even if I had three partners, I know women with a lot more, so I don't think I'm the one you're talking to.'"
"There are so many women who don't think they are at risk because we have stigmatized how you get HIV," Diallo continued.
Whether or not someone is having sex that puts him or her at greater risk for acquiring HIV, it is clear that HIV remains a major health risk for the black community. The CDC projects that at current U.S. rates, approximately one in 20 black men, one in 48 black women, and one in two black men who have sex with men will be diagnosed with HIV during their lifetimes. As of 2015, black women in the U.S. made up 11% of all HIV diagnoses and 61% of diagnoses among all women.
"We know the rates are very high in the African-American community and in the South. If we want to see those rates go down, then we have to remove those barriers," said Jones of UCHAPS. "There is a lot of stigma around sex, period. It's important to address stigma because it keeps people from getting the care that we believe keeps people staying healthy."
The panel discussed the need for more communication and programs to address stigma and our biases when talking about HIV, as well as for more broad-based HIV testing efforts that make HIV testing a routine part of any health care practice, instead of isolating high risk areas/populations, which increases stigma around the act of testing. In addition to testing, panelists discussed the need to help providers and public health officials reframe ideas about "risk" not to stigmatize or alienate people further.
"There is this idea that black people are disproportionately affected by HIV because we are engaging in riskier activities. This is not true," Johns said. "Those misconceptions are things we have to continue to work through."